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Wednesday, August 22, 2012

Shoshana: Outpatient

Shoshana was discharged from Seattle Children's Hospital on Sunday afternoon. This was a day or two earlier than we had been expecting, but a welcome surprise. She was off of her IV in the morning, so she and I got to ride bikes through the unit halls together (previously, I was always wheeling her IV cart and minding her line). Once we got home, everyone went down for a much-needed nap.

Bikes and toys

Daddy's ride

The new accommodations we need to make for Shoshana's leukemia and treatment are twofold:

First, her immune system is suppressed. Elizabeth and I are not at all germophobic, so this is definitely an adjustment, but one that we can certainly make. Shoshana can no longer go out in the back yard with the goats (and their poop on the ground). We need to pasteurize the goat's milk before she drinks it. We need to be careful with bacteria in foods: certain kinds of foods are out; others simply require more care or preparation. No sharing dishes or utensils, no buffet foods, no probiotics (normal yogurts and non-soft cheeses are fine, as long as they are from pasteurized milk).

We also need to be extra careful not to expose her to anything: visitors can't have been sick for three days, or exposed to anything at home. We can't take her out anywhere with crowds of people. This includes shopping, playgrounds, the fair, church, etc. Her white blood cells won't be able to respond to an infection, so a fever is the only sign that we will have if she gets one. We need to monitor her closely, and be prepared to take her to the hospital immediately if she spikes a fever. For the most part, these are pretty manageable. Not very convenient, but manageable.

Shoshana shows off her new beret.

Second, she is on a regimen of medications. This is turning out to be difficult for Shoshana. When she was in the hospital, most of her medications came through her IV line, though not all of them. Some she needed to take orally. She's too young to swallow pills, so this means she got a liquid syringe squeezed into her mouth. Initially at the hospital, she was okay with this. However, some of these medications don't taste very good. After taking a particularly bitter pink medicine syringe, she proceeded to throw up her entire stomach contents. Her nausea was probably not entirely due to the flavor of the medication, but she immediately associated it with that flavor, and all syringes of medication (especially pink), even the sweet-tasting ones. She insisted that the medications were hurting her; they made her sick, and they were all yucky and vomit-inducing.

She managed to get her medications down on Sunday night. Monday morning was a battle. Monday evening, she again emptied her entire stomach (a rather large helping of delicious beef and lentil stew made by her grandmother). As best I can tell, what made her vomit was not the food or medication in her stomach. It was her panicked reaction to being made to swallow "yucky" medicine. The battles were a drain on everyone, but especially on Elizabeth.

Tuesday was our first outpatient clinic visit, and we brought up the problem with the doctor. She suggested that we could get pills instead of liquids, and crush them and put them in different things to see what would work. Some of the pills were easy enough to conceal in food, others not.

Wednesday morning was the last straw for Elizabeth. She did not want to fight Shoshana for every dose of medication. Shoshana was starting to become suspicious of everything that we asked her to eat. She would refuse to eat what we offered, and make demands for other things.

Elizabeth had been advocating for a nasogastral tube since before our clinic visit on Tuesday. She had had nothing but good experiences with it in her nursing career (she has not worked in pediatrics), and we had seen many other children in the hospital with n-g tubes. I agreed that we should call and ask to come in to the clinic (again) today to have a tube inserted. We did our best to explain to Shoshana what the tube was, and that its purpose was so that she would not need to taste any of the medicines. Nevertheless, she freaked out. The tube cause her discomfort, and she refused to be consoled. She screamed and cried for hours. She was finally able to get some sleep, and is eating some noodle soup as I write this (praise the Lord).

Shoshana with her n-g tube, finally comfortable enough to eat. Still not very comfortable.

Please continue to pray:

Comfort and peace for Shoshana. That she will be given understanding and courage. So much has been asked of her, and she has taken so much in stride. No three-year-old should have to go through this kind of thing, but she must.

A solution to the medication dilemma. We are hoping that Shoshana will adapt to the presence of the tube, but it may take a few days, and in the meantime it affects her swallowing and breathing. We would prefer not to put Shoshana on anti-anxiety medication, just so that she can take her medication.

Comfort and peace for me and Elizabeth. Shoshana's leukemia is as much or more of a life-change as having our first baby, and far less anticipated. We are very thankful for those who stepped in to care for our 8-month old Abigail, and our household needs during the hospital stay.

Things that would especially help us at this stage:

Childcare for Abigail, our 8-month-old, while we take Shoshana on her many clinic visits. The first month is the most intense. We have already been in twice this week, and we expect to go in tomorrow for a blood transfusion. We are told that three to four times a week is normal. Elizabeth's mom Kristen has been doing this (as well as helping us at home). We would like for her to have breaks now and then. (Also: see below on my work situation.)

Meals. A meal plan is being arranged through our church. The clinic
visits are exhausting, as is dealing with a frightened, cranky
three-year-old on steroids (literally). Worrying less about meals means
we are more available to meet Shoshana's other needs. There are a few
considerations for bacteria (and we want to avoid pesticides on
produce), but other than that, we are not too picky.

Breaks and gofers: There are errands that Liz can't take Shoshana on because of her compromised immune system. I would also like to take Liz on a date at some point. This is more complicated than simple babysitting, since whoever looks after the girls needs to be brought up to speed on what to watch for, and how to respond.

Abigail with Grandma

We have been so thankful and amazed at the support we have been getting. Elizabeth especially has been encouraged by the comments and posts friends and family have made on Facebook. (So have I.) We have received care packages for Shoshana with crafts, coloring books, stickers, etc. We have received gas cards and grocery cards (and coffee cards) some from people I hardly know, some from family or church friends, and some from old friends who live far away. We are keeping a box with the personal notes and cards, so that Shoshana can look through them as she gets older. Some of them made me cry. [Context: I cry easily.]

Stickers!

We can't always accept visitors, and there are some sanitary restrictions (see above), but we definitely appreciate visitors: both visitors Shoshana's age, and grown-up visitors. It's nice to have grown-up time when we can get it.

I have taken last week and this week off of work. I don't have very much sick leave, but I do have some vacation time built up. I'm not sure how we're going to deal with all of the clinic visits this month. I can get family leave time off work, but I won't get paid unless I have vacation or sick leave to cover it. If someone else can take Abigail, Elizabeth and her mom can be with Shoshana at the clinic. At this point, I don't want Elizabeth to have to bring her alone.